Kids DO get MS

Last week my husband and I went to Capitol Hill and spoke to more than 30 congressional members and staff who were gathered to learn more about a topic close to our hearts: pediatric MS. Together with the Director of Partners Pediatric MS Center and Associate Professor of Neurology at Harvard Medical School, Dr. Tanuja Chitnis, we helped shed light on a diagnosis that affects an estimated 8,000 to 10,000 children and adolescents, including our son Sean.

Sean's symptoms started when he was just 7 years old. He was dizzy, off balance, and had slurred speech. We took him to the emergency room, where – during the course of a weeklong stay in the intensive care unit – a battery of tests was performed and a diagnosis of Acute Disseminating Encephalomyelitis (ADEM) was made. I remember reading about ADEM and the mention of MS, but I never thought twice about it since we had heard that “kids don’t get MS.”

Sean was symptom-free for three years until we once again found ourselves at the hospital where an MRI showed lesions in his brain consistent with MS. A painful spinal tap confirmed the diagnosis… we were devastated. As a neonatal intensive care nurse, I knew very little about MS. Thankfully, the Children's Hospital of Philadelphia was getting their MS center up and running, and we were able to meet our neurologist, Dr. Amy Waldman.

Unsure how long Sean’s next relapse might last, we began seriously considering what therapies were available. None of the current MS therapies are approved by the FDA for children, and of course the four medications approved for adults with MS at the time were all injectable ― not exactly kid-friendly. The most difficult part was telling Sean that he was going to have a shot every week. We would do something special on injection day, like a movie or a special dinner. He was always such a champ; he never complained. I gave the injections to him until his senior year in high school when he began using a self-injector to prepare for college. Sean's proud that he has only missed one week of medication over the last nine years. I think in his mind, as long as he takes his medicine, he will not flare and end up back in the hospital. So far so good!

Early on we went to National MS Society events, anxious to meet other parents and kids that truly understood our situation. We needed reminding that we were not alone. We heard one thing over and over from parents, "My doctor said that kids don't get MS." My hope is to squash that myth so that more money, more grants and more pediatric centers for MS can exist across the country.

Sean is a true success story and we could not be more proud. He has not been hospitalized since he started on a disease-modifying therapy and his MRIs have been stable over the last five years. He does well in school, is active as a runner, and just started his sophomore year of college focused on finance and accounting. We've been involved in the MS City to Shore Bike MS event since his diagnosis and have raised $80,000 to date. We will ride until a cure is found – we just completed our ninth ride with Team Taylor. Sean even designed our team jerseys!

 From the ACTRIMS-ECTRIMS research conference in Boston, to the halls of the Dirkesen Senate building, to Bike MS events, pediatric MS is coming to light. Learn more from MS blogger, Julie Stachowiak “Parent experience of pediatric multiple sclerosis.” Or contact your members of congress to urge support for MS research funding – specify your focus on pediatric MS in your note!

Patty Taylor’s son, Sean, began experiencing symptoms at the age of 7 and was officially diagnosed with pediatric MS three years later. The MS movement has become a family affair for the New Jersey family; their Bike MS team has raised more than $80,000.

Tags Activism & Advocacy, Parenting      7 Appreciate this
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  • Blessed!   Oct 3, 2014 2:50 PM
    Continued success with fund-raising and your Bike Team for Sean. I am also a NICU RN, and I had to press for my physician to perform an MS work-up. Not that I wanted that diagnosis, however, I was relieved to know my physical complaints were valid and, no, I wasn't nuts. And I concur, we need to find a cure. Thank you for sharing your blog.
  • simone   Oct 3, 2014 6:16 PM
    Pediatric MS is real and my son in law is a pediatric neurologist and his speciality is pediatric ms. I am proud of your son. Hope and pray that they find a cure soon.
  • Alejandro Garcia   Oct 4, 2014 3:20 AM
    I'm very sad to hear that. :( personally, my symptoms started at the she of 2. I was born in Guatemala. My symptoms were no speech at all, left eye paralysis and 0 legs motor skills. Later for months, week into my 3 years. When I was 5 another attack arose when they discovered a lesion in my right brain hemisphere. It subsided after a few weeks. I am now 23, on the bebe of 24. Was finally diagnosed on June 6, 2014 and have been admitted 6 times to the hospital for treatment. I've seen 3 neurologists who, by far, seen quite puzzled by my particular case. Believe me, I know how this all feels. It's not impossible and God will never give any of us more than we can handle
  • Eva Marsh   Oct 4, 2014 8:50 AM
    Symptoms began the summer I was 8, 1952, R knee buckled, R arm "asleep," sensation of bugs crawling on my scalp ... doctors said "creative imagination." Mother said run outside and lay and you'll be fine. Indeed, the symptoms went away in a 2-3 weeks, and I grew up making the connection between movement and correction of symptoms. After diagnosis in 1967 I found research PROVING that movement engages the healing process. Waiting for the system to read the research too. Now 70, fully mobile, and symptom free. my book now in 5th printing - Black Patent Shoes Dancing With MS. Since diagnosis in 1967 I have watched the system complicate the management of MS and ignore their own research.
  • Marge   Oct 4, 2014 9:24 PM
    My symptoms started at the age of 10, but the seizures, pain, ants crawling all over, and continuing loss of my eyesight with no explanations prompted my Mom to drive me out to Mayo Clinic the summer I turned 12 in 1973. They diagnosed it as MS even though there was no way to prove it back then. I am now 56, have two very healthy married children ages 29 and 39. I am not as mobile as I would like, but I am still working on it every day. What they have learned over the last 10-15 years if light years ahead of what they knew back in 1973.

    Stay positive and stay active and you can live a very long prosperous, rewarding life even with MS.
  • Becky   Oct 7, 2014 12:45 PM
    Our daughter was just diagnosed this past June with MS. She is 7 years old. In march she was hospitalized with severe dizziness, double vision and balance issues. The MRI confirmed she had 3 lesions at the time and the spinal tap showed signs of MS. She currently gets an injection every other day to hopefully slow down the lesions. We are finding it really hard to find info on pediatric MS. We have contacted the MS society which sent us some info and we have participated in our first MS walk but we have yet to meet another family with a child going through the same thing. Besides her neurologist, none of her other drs or therapists have ever heard of anyone having MS at this age.
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    babygirl18  Nov 1, 2014 2:33 PM
    I was 16 years of age when I diagnosed with MS and I am 19 years of age now, but the doctors kept saying I am to young and it is mostly common in Caucasian and white people. When I lost my eyesight that is when they realized I really had MS.
  • randeeplus5  Nov 3, 2014 2:39 PM
    My 13 yr old daughter was just dx in June of this yr. It has hit her very hard, she has lesions all through out her brain, neck and spine. She can no longer walk without a walker and on bad days she has to use a wheel chair. We were told to meet with an Oncologist at Primary Children's Hospital, when we got to the ER the did the spinal tap and we got a confirmed dx of MS. It has turned our life upside down! Thank you for sharing!
  • patty   Dec 26, 2014 12:46 PM
    My daughter was diagnosed just last year at the age of 14, this has rattled our world. We believe that with the lord by our sides we can overcome this. Its not gonna get us down.